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  • Journal article
    Luna Puerta L, Kendall W, Davies B, Day S, Ward Het al., 2020,

    The reported impact of public involvement in biobanks: a scoping review

    , Health Expectations, Vol: 23, ISSN: 1369-6513

    BackgroundBiobanks increasingly employ public involvement and engagement strategies, though few studies have explored their impact. This review aims to (a) investigate how the impact of public involvement in biobanks is reported and conceptualized by study authors; in order to (b) suggest how the research community might re‐conceptualize the impact of public involvement in biobanks.MethodsA systematic literature search of three electronic databases and the INVOLVE Evidence Library in January 2019. Studies commenting on the impact of public involvement in a biobank were included, and a narrative review was conducted.Results and discussionForty‐one studies covering thirty‐one biobanks were included, with varying degrees of public involvement. Impact was categorized according to where it was seen: ‘the biobank’, ‘people involved’ and ‘the wider research community’. Most studies reported involvement in a ‘functional’ way, in relation to improved rates of participation in the biobank. Broader forms of impact were reported but were vaguely defined and measured. This review highlights a lack of clarity of purpose and varied researcher conceptualizations of involvement. We pose three areas for further research and consideration by biobank researchers and public involvement practitioners.ConclusionsFunctional approaches to public involvement in biobanking limit impact. This conceptualization of involvement emerges from an entrenched technical understanding that ignores its political nature, complicated by long‐standing disagreement about the values of public involvement. This study urges a re‐imagination of impact, re‐conceptualized as a two‐way learning process. More support will help researchers and members of the public to undergo such reflective exercises.

  • Report
    Pristera P, Papageorgiou V, Kaur M, Atchison C, Redd R, Bowman L, Piggin M, Ward Het al., 2020,

    Report 14: Online community involvement in COVID-19 research & outbreak response: early insights from a UK perspective

    The Patient Experience Research Centre (PERC) at Imperial College London is developing research to explore and understand people’s views about, experiences of and behavioural responses to the outbreak in the UK and elsewhere. To guide that effort and to help inform COVID-19 research and responses more broadly - for example in mathematical modelling and policy - PERC launched an online community involvement initiative that sought rapid, early insight from members of the public and aimed to establish a network for ongoing community engagement.Priority areas for COVID-19 research Vaccine development was considered the most urgent research priority for many respondents. Social studies exploring the public’s experiences, risk perceptions and behaviours during this outbreak were necessary and important according to 95% of the respondents. Such research could:Improve the way the current outbreak response is planned and implemented;Improve the way information and guidance is provided to and understood by the public;Optimise the support provided to communities and vulnerable groups; andImprove future outbreak preparedness.Other recommended areas of research included:Understanding the role of the media in influencing how people react and respond;Furthering our basic understanding of the virus – how it spreads, who it affects the most and why, and whether people achieve and maintain immunity after being infected;Critiquing the UK’s response to the pandemic against that of other countries; andEnsuring lessons can be learnt from this outbreak to better equip us for future outbreaks, and public health emergencies in general.Key unmet needs amongst communities The main challenges described by respondents were ineffective communication, including access to information and information overload; and conflicting guidance and misinformation. Respondents’ described feelings of concern, confusion and, in some cases, panic as a result of these communication a

  • Report
    Atchison C, Bowman L, Eaton J, Imai N, Redd R, Pristera P, Vrinten C, Ward Het al., 2020,

    Report 10: Public response to UK Government recommendations on COVID-19: population survey, 17-18 March 2020

    , 10

    On Monday 16th March 2020 the UK government announced new actions to control COVID-19. These recommendations directly affected the entire UK population, and included the following: stop non-essential contact with others; stop all unnecessary travel; start working from home where possible; avoid pubs, clubs, theatres and other such social venues; and to isolate at home for 14 days if anyone in the household has a high temperature or a new and continuous cough. To capture public sentiment towards these recommendations, a YouGov survey was commissioned by the Patient Experience Research Centre (PERC), Imperial College London. The survey was completed by 2,108 UK adults between the dates of 17th – 18th March 2020. The survey results show the following:• 77% reported being worried about the COVID-19 outbreak in the UK.• 48% of adults who have not tested positive for COVID-19 believe it is likely they will be infected at some point in the future.• 93% of adults reported personally taking at least one measure to protect themselves from COVID-19 infection, including:o 83% washed their hands more frequently;o 52% avoided crowded areas;o 50% avoided social events;o 36% avoided public transport;o 31% avoided going out;o 11% avoided going to work;o 28% avoided travel to areas outside the UK.• There is high reported ability and willingness to self-isolate for 7 days* if advised to do so by a health professional (88%).• However only 44% reported being able to work from home. This was higher among managerial and professional workers (60%) than manual, semi-skilled, and casual workers (19%)^, reflecting less flexible job roles for manual and lower grade workers. • 71% reported changing behaviour in response to government guidance. The figure (53%) was lower for young adults (18-24 year-olds).• Hand washing (63%), avoiding persons with symptoms (61%), and covering your sneeze (53%) were more likely to be perceived as ‘very effective&rs

  • Journal article
    Papageorgiou V, Wharton-Smith A, Campos-Matos I, Ward Het al., 2020,

    Patient data-sharing for immigration enforcement: a qualitative study of healthcare providers in England

    , BMJ Open, Vol: 10, ISSN: 2044-6055

    Aim: To explore healthcare providers’ perceptions and experiences of the implications of a patient data-sharing agreement between National Health Service (NHS) Digital and the Home Office on access to NHS services and quality of care received by migrant patients in England.Design: A qualitative study using semi-structured interviews, thematic analysis and constant-comparison approach.Participants: Eleven healthcare providers and one non-clinical volunteer working in community or hospital-based settings who had experience of migrants accessing NHS England services. Interviews were carried out in 2018.Setting: England.Results: Awareness and understanding of the patient data-sharing agreement varied among participants, who associated this with a perceived lack of transparency by the government. Participants provided insight into how they thought the data-sharing agreement was negatively influencing migrants’ health-seeking behaviour, their relationship with clinicians and the safety and quality of their care. They referred to the policy as a challenge to their core ethical principles, explicitly patient confidentiality and trust, which varied depending on their clinical specialty.Conclusions: A perceived lack of transparency during the policy development process can result in suspicion or mistrust towards government among the health workforce, patients and public, which is underpinned by a notion of power or control. The patient data-sharing agreement was considered a threat to some of the core principles of the NHS and its implementation as adversely affecting healthcare access and patient safety. Future policy development should involve a range of stakeholders including civil society, healthcare professionals and ethicists, and include more meaningful assessments of the impact on healthcare and public health.

  • Journal article
    Riley S, Atchison C, Ashby D, Donnelly CA, Barclay W, Cooke GS, Ward H, Darzi A, Elliott Pet al., 2020,

    REal-time Assessment of Community Transmission (REACT) of SARS-CoV-2 virus: Study protocol [version 1; peer review: 1 approved, 1 approved with reservations]

    , Wellcome Open Research, Vol: 5, Pages: 1-17

    Background: England, UK has one of the highest rates of confirmed COVID-19 mortality globally. Until recently, testing for the SARS-CoV-2 virus focused mainly on healthcare and care home settings. As such, there is far less understanding of community transmission. Protocol: The REal-time Assessment of Community Transmission (REACT) programme is a major programme of home testing for COVID-19 to track progress of the infection in the community. REACT-1 involves cross-sectional surveys of viral detection (virological swab for RT-PCR) tests in repeated samples of 100,000 to 150,000 randomly selected individuals across England. This examines how widely the virus has spread and how many people are currently infected. The age range is 5 years and above. Individuals are sampled from the England NHS patient list. REACT-2 is a series of five sub-studies towards establishing the seroprevalence of antibodies to SARS-CoV-2 in England as an indicator of historical infection. The main study (study 5) uses the same design and sampling approach as REACT-1 using a self-administered lateral flow immunoassay (LFIA) test for IgG antibodies in repeated samples of 100,000 to 200,000 adults aged 18 years and above. To inform study 5, studies 1-4 evaluate performance characteristics of SARS-CoV-2 LFIAs (study 1) and different aspects of feasibility, usability and application of LFIAs for home-based testing in different populations (studies 2-4). Ethics and dissemination: The study has ethical approval. Results are reported using STROBE guidelines and disseminated through reports to public health bodies, presentations at scientific meetings and open access publications. Conclusions: This study provides robust estimates of the prevalence of both virus (RT-PCR, REACT-1) and seroprevalence (antibody, REACT-2) in the general population in England. We also explore acceptability and usability of LFIAs for self-administered testing for SARS-CoV-2 antibody in a home-based setting, not done before at

  • Journal article
    Riley S, Atchison C, Ashby D, Donnelly CA, Barclay W, Cooke GS, Ward H, Darzi A, Elliott P, REACT study groupet al., 2020,

    REal-time Assessment of Community Transmission (REACT) of SARS-CoV-2 virus: Study protocol.

    , Wellcome open research, Vol: 5, ISSN: 2398-502X

    <b>Background:</b> England, UK has one of the highest rates of confirmed COVID-19 mortality globally. Until recently, testing for the SARS-CoV-2 virus focused mainly on healthcare and care home settings. As such, there is far less understanding of community transmission. <b>Protocol:</b> The REal-time Assessment of Community Transmission (REACT) programme is a major programme of home testing for COVID-19 to track progress of the infection in the community. REACT-1 involves cross-sectional surveys of viral detection (virological swab for RT-PCR) tests in repeated samples of 100,000 to 150,000 randomly selected individuals across England. This examines how widely the virus has spread and how many people are currently infected. The age range is 5 years and above. Individuals are sampled from the England NHS patient list. REACT-2 is a series of five sub-studies towards establishing the seroprevalence of antibodies to SARS-CoV-2 in England as an indicator of historical infection. The main study (study 5) uses the same design and sampling approach as REACT-1 using a self-administered lateral flow immunoassay (LFIA) test for IgG antibodies in repeated samples of 100,000 to 200,000 adults aged 18 years and above. To inform study 5, studies 1-4 evaluate performance characteristics of SARS-CoV-2 LFIAs (study 1) and different aspects of feasibility, usability and application of LFIAs for home-based testing in different populations (studies 2-4). <b>Ethics and dissemination:</b> The study has ethical approval. Results are reported using STROBE guidelines and disseminated through reports to public health bodies, presentations at scientific meetings and open access publications. <b>Conclusions:</b> This study provides robust estimates of the prevalence of both virus (RT-PCR, REACT-1) and seroprevalence (antibody, REACT-2) in the general population in England. We also explore acceptability and usability of LFIAs for self-administered

  • Journal article
    Riley S, Atchison C, Ashby D, Donnelly CA, Barclay W, Cooke GS, Ward H, Darzi A, Elliott P, REACT study groupet al., 2020,

    REal-time Assessment of Community Transmission (REACT) of SARS-CoV-2 virus: Study protocol.

    , Wellcome Open Res, Vol: 5, ISSN: 2398-502X

    Background: England, UK has one of the highest rates of confirmed COVID-19 mortality globally. Until recently, testing for the SARS-CoV-2 virus focused mainly on healthcare and care home settings. As such, there is far less understanding of community transmission. Protocol: The REal-time Assessment of Community Transmission (REACT) programme is a major programme of home testing for COVID-19 to track progress of the infection in the community. REACT-1 involves cross-sectional surveys of viral detection (virological swab for RT-PCR) tests in repeated samples of 100,000 to 150,000 randomly selected individuals across England. This examines how widely the virus has spread and how many people are currently infected. The age range is 5 years and above. Individuals are sampled from the England NHS patient list. REACT-2 is a series of five sub-studies towards establishing the seroprevalence of antibodies to SARS-CoV-2 in England as an indicator of historical infection. The main study (study 5) uses the same design and sampling approach as REACT-1 using a self-administered lateral flow immunoassay (LFIA) test for IgG antibodies in repeated samples of 100,000 to 200,000 adults aged 18 years and above. To inform study 5, studies 1-4 evaluate performance characteristics of SARS-CoV-2 LFIAs (study 1) and different aspects of feasibility, usability and application of LFIAs for home-based testing in different populations (studies 2-4). Ethics and dissemination: The study has ethical approval. Results are reported using STROBE guidelines and disseminated through reports to public health bodies, presentations at scientific meetings and open access publications. Conclusions: This study provides robust estimates of the prevalence of both virus (RT-PCR, REACT-1) and seroprevalence (antibody, REACT-2) in the general population in England. We also explore acceptability and usability of LFIAs for self-administered testing for SARS-CoV-2 antibody in a home-based setting, not done before at

  • Journal article
    Ward H, 2019,

    Numbers and narratives: approaches to understanding patients’ experiences

    , XPA & Health Communication, Vol: 2, ISSN: 2604-0999
  • Journal article
    Rai T, Bruton P, Kall M, Ma R, Pufall E, Day S, Delpech V, Ward Het al., 2019,

    Experience of primary care for people with HIV: a mixed-method analysis

    , British Journal of General Practice, Vol: 3, ISSN: 0960-1643

    BackgroundAdvances in treatment have transformed HIV into a long-term condition (LTC), presenting freshchallenges for health services, HIV specialists and general practitioners (GPs).AimTo explore the experience of people living with HIV (PLHIV) regarding using their GPs.Design and settingA mixed-method analysis using data from two sources: a nationally-representative survey of PLHIVand a qualitative study with London-based PLHIV.MethodsUnivariate logistic regression for quantitative data and Framework analysis for qualitative data.ResultsThe survey had 4,422 participants; the qualitative study included 52 participants. In both studies, GPregistration and HIV status disclosure were high. Similar to general population trends, recent GP usewas associated with poor self-rated health status, co-morbidities, older age and lower socioeconomic status. Two-thirds reported a good experience with GPs; a lower proportion feltcomfortable asking HIV-related questions. Actual or perceived HIV stigma were consistentlyassociated with poor satisfaction. In the interviews, participants with additional LTCs valuedsensitive and consistent support from GPs. Some anticipated, and sometimes experienced, problems relating to HIV status, GPs’ limited experience and time to manage their complex needs. Sometimesthey took their own initiatives to facilitate coordination and communication. For PLHIV, a ‘good’ GPoffered continuity and took time to know and accept them without judgement.ConclusionWe suggest clarification of roles and provision of relevant support to build confidence in GPs andprimary care staff to care for PLHIV. As PLHIV population ages, there is a strong need to developtrusting patient/GP relationships and HIV-friendly GP practices.

  • Conference paper
    Papageorgiou V, Jones K, Mindham R, Halliday B, Prasad S, Ward Het al., 2019,

    ‘Do I really want to do this for the rest of my life?’: a qualitative exploration of participant and study staff perspectives from the Therapy withdrawal in Recovered Dilated cardiomyopathy - Heart Failure (TRED-HF) study

    , Chronic Living Conference 2020

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